What ‘doing well’ can actually mean for those living with ITP

For more than 15 years, I’ve been what I often describe as “free of immune thrombocytopenia” (ITP).

I don’t take medication for it, and I don’t have regular appointments with a hematologist. My platelet counts have remained within a normal range and, thankfully, ITP no longer dictates my everyday life. But am I ever completely free of it?

I was 8 years old when I was diagnosed with ITP. At an age when most children were concerned with school, friendships, and what they would play at lunchtime, I became very familiar with blood tests, platelet counts, hospitals, and steroids.

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When you have ITP, platelet counts are incredibly important. That number determines whether everyone breathes a sigh of relief or starts discussing what happens next. It can mean treatment, another blood test, or simply waiting and hoping the next result will be better.

Eventually, my platelet count stabilized. The hospital appointments became less frequent and eventually stopped. I got on with my life.

What ‘doing well’ looks like for me

I’ve now gone more than 15 years without ITP treatment or a significant relapse. I feel incredibly lucky to be able to say that. But I’ve realized that, for me, being “well” doesn’t simply mean having a healthy platelet count. The experience of living with ITP hasn’t completely left me, and I don’t think it ever will.

If I discover an unexplained bruise, there’s still that thought in the back of my mind: I wonder what my platelet count is? When I have a routine blood test, my eyes always go to the platelet results first. And whenever I’ve needed medical treatment or gone through pregnancy and childbirth, my history of ITP has been something I’ve mentioned, discussed, and thought about, time and time again.

That’s why I think we need to look beyond numbers when we talk about what it means to be “doing well” with ITP.

Of course, platelet counts matter. They help doctors assess bleeding risk and decide on treatment. But they don’t capture the whole person.

Doing well can also mean having the energy to work, exercise, or spend time with your family. It can mean making plans without wondering whether ITP will interfere. It can mean getting through a week without checking your body for bruises. It can mean reaching the point where ITP isn’t the first thing you think about when you wake up.

For me, perhaps the biggest indication of doing well is that ITP has become only part of my story rather than the main plotline. I’m a mum, wife, business owner, writer, and a million other things before I’m someone who once managed ITP. But that 8-year-old girl who learned what a platelet count is far earlier than she should have is still a part of me, too.

So, yes, I’ve been “free of ITP” for more than 15 years, but being free doesn’t mean forgetting it ever happened. It means living a life where the numbers no longer define me.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.